A Bacterium From the Bottom of the Earth

[Howardh]

Last Sunday I indulged in a family dinner (as you do Sundays) only to be struck down Monday morning with nausea and gastrointeitis symptoms from the dinner of the night before. After taking my first meds for the day, a big chuck (vomit) followed immediately, and the body completely froze. Nobody knew what to do, least of all me so my GP (family Dr) suggested the local Hospice where I spent the next 36 hours, unable to move and meds not kicking in. At one stage during that Monday the medical people tried a combination of double and triple dosing meds. Nothing worked. A saline drip was included. Over night the body improved and the meds kicked in and I went home with some optimism. The nausea and gastro symptons had completely disipaited. The off time period however had dramatically increased from a manageable/functional period into a difficult immobile state where assisted help is necessary. Tuesday night the body again went on strike with no meds kicking in and immobility rampant. Back to the Hospice for more observation. It was decided to change my not so powerful sinemet meds from Regular 100 mg sinemet to the more powerful 200 mg ‘Controlled Release” (CR) sinemet. The old 100mg regular sinemet of which I had been on since 1999 when I took meds for the first time, kicked in 30 minutes after absorption. The new 200 CR sinemet takes an hour to kick in. I have suddenly gone from 900mg of the regular meds (6x 1.5 tabs a day every three hours) to 6x 200mg per day. (1x tab every four hours) Half a tab of the old 100mg sinemet was added to offset the slow release of the new 200 CR sinemet. A total of 1500mg. I also take 3x Tolcopone a day. The big concern is once the meds wears off I am completley immobile. 900mg per day to 1500mg per day seems a lot to absorb. Any observation welcome particularly on the immobile phase that has set in and has the med people here perplexed. i am in new uncharted territory.

[Ronhutton]

Hi Howard,
This looks like an infection of some sort. Just last week I experienced something similar. I was doing fine until I got a very heavy cold.
The worst aspect was When my meds wore off, I was dreadful, could not do a thing. For the first time I needed help to do the simplest of things, even dressing myself.
However, once the cold wore off, I was fine again. My neuro believes infections can hit a PWP a lot harder than healthy people.
Have you suffered a cold, flu, or some other infection? If you have and can erradicate it, you may find you are back to your normal self.
Ron

[Howardh]

no flu like symptons. We are experiencing a long hot summer in this part of the world. Autumn (fall) has not arrived although we are in the middle of our autumn period. Fitness and health levels are excellent. The only sympton experienced was the nausea and vomiting which has now completely cleared. The new CR 200 sinemet is doing a great job once it kicks in an hour after taking. The off periods are daunting and unpleasant. Each day will be monitered. The longer on periods are brilliant. The contrast between on and off is huge and the immobility is devastating.

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Hi Howard,
This looks like an infection of some sort. Just last week I experienced something similar. I was doing fine until I got a very heavy cold.
The worst aspect was When my meds wore off, I was dreadful, could not do a thing. For the first time I needed help to do the simplest of things, even dressing myself.
However, once the cold wore off, I was fine again. My neuro believes infections can hit a PWP a lot harder than healthy people.
Have you suffered a cold, flu, or some other infection? If you have and can erradicate it, you may find you are back to your normal self.
Ron

[Ronhutton]

Hi Howard,
Your vomiting could still be an infection. One other thing I thought of is sudden chane of meds can cause this sort pf problem. Have you made any changes there. Casting my mind back, I stopped pergolide suddenly, and I had the same dreadful offs. I went back on to it and slowly titrated off. I returned to normal, where unmedicated I can shower, dress and drive with no problems. Incidently, each time I have had very bad offs, I have to urinate very frequently.
Ron

[reverett123]

Howard-

I had wondered if anyone else had had times when meds simply had no effect whatsoever. I mean triple and quadruple dosing and zero effect. I have had such episodes for about three years. Unrelated to infection but definitely related to diet, in my case. By trial and error, I have found it to be a reaction to MSG in food. This actually translates to MSG > glutamate > overstimulation of NMDA receptors > overwhelming of neural firing.

I don't know if there is a clue there or not. If no one else became ill, a pathogen might not be the problem. And no flu-like symptoms. Any unusual foods? Anything with seaweed?

-Rick

[paula_w]

Hi Rick,

Carolyn will attest to my having the same problem. Just the other day coming home from a conference, we had a wonderful big breakfast. I ate eggs benedict and potatoes - cleaned my plate, a rarity. I knew I would pay for it and did - big time. I popped sinemet right and left...was almost on but my mouth wouldn't work. Kept taking it, at least triple dose. To no avail. I went into dystonia on the van to the airport and by the time I arrived, had to call for a wheelchair.

People wonder why pwp get so skinny. It's eat light or be "off". This happens to me regularly.

paula

[reverett123]

Like Ron, my reaction also involves bladder going into overdrive. And, like Paula, eating out is a definite risk factor.

What I experience is definitely more than just the meds running low. They just don't work. Four to eight hours is typical and it is the most unpleasent part of the PD experience for me. A definite cognitive element too and a sense of overstimulation or, now that I think about it, more like a hypersensitivity to stimulation.

I can pretty much trigger it at will by eating certain things - all are processed foods MSG in some form. The hypersensitivity ties into that since the brain is itself on overdrive. I can only sit and withdraw and wait it out with the occasional crawl to the john.

I thought it was just me, but now I wonder how widespread it is. Also, it was not originally part of the picture but started around three year ago.

But let's not forget Howard. Was there anything in that dinner that might be suspect?

[reverett123]

Looked back at my journal when I was first dealing with this. From two years ago, I wrote:

"
My symptoms in general order of appearence are runny nose, sensation of bloating beginning, loss of muscle tone in legs, heavy arms almost useless, tunnel vision, stiffness, cognitive disassociation, extreme urine output (as often as ten minutes). Weak as a kitten and just sitting waiting for the brain fog to lift. All symptoms in place by T+60 minutes. Then they fade in reverse order on a similar time scale. "

[centralPark]

I am amazed at the detail in Rick's post in terms of symptom tracking-also others on this forum....these notes and recording of symptoms are a scientist's dream-where are those guys? Anyone ever thought of submitting their symptom log, for lack of a better name for it, to a research facility to see if they could make good use of it? Never thought of this before, but it sounds like there are more than a few people here who have kept meticulous records of their journey with PD and I can't help but think "there's gold in them thar hills"! Just a thought. Keep on loggin'!



Looked back at my journal when I was first dealing with this. From two years ago, I wrote:

"
My symptoms in general order of appearence are runny nose, sensation of bloating beginning, loss of muscle tone in legs, heavy arms almost useless, tunnel vision, stiffness, cognitive disassociation, extreme urine output (as often as ten minutes). Weak as a kitten and just sitting waiting for the brain fog to lift. All symptoms in place by T+60 minutes. Then they fade in reverse order on a similar time scale. "

[Fiona]

wish I could keep as detailed a log but there seems to be SO much information and so many variables, including who's in the room at the time etc. But yes, dose failure, yes - and it seems the only answer to that is to "flood" my system with sinemet until 'something' kicks in and then I'm back to normal. I think it definitely happens in response to eating and nothing really in particular. Just can't eat a lot and expect to be functional afterwards....I think the pills just die somewhere on their way to working sometimes.....PaulaW, I had similar experience to you last week - with dystonia, etc., and it happened in an awful situation, a very public setting at my job with all the faculty and students and parents there. I have yet to find out whether I still have a job now. Upsetting, especially since the dystonia has been so much better lately.....

RonHutton, can I ask, what do you mean by slow titration? What length of time are you talking about....

[Ronhutton]

Hi Fiona,
It can take several weeks to safely get off taking drugs. There is an illness called Neuroleptic Malignant Syndrome which can be caused by suddenly stopping certain drugs. It can even be fatal.
When I exited Pergolide, I gradually reduced my dose over around 4 weeks, until I was on a miniscule dose for the last week. I have read that sinemet is even more difficult to stop. You have to be very careful stopping any drug suddenly.
Ron

[Howardh]

change of meds Ron. Rick hit the nail on the head when he mentioned Gluten and I'll get into that next. It is now a week since that dreadful day i spent frozen solid. Intensely unpleasant experience, Hopefully never to replicate itself again. The new meds are astonishingly brilliant. i am getting 4 to 4.5 hours on time from each dose. My dose consists of 1x half a tab of the100mg regular sinemet to kick start the on time. 1x 200mg CR sinemet. Sinemet combination 6 times a day. Tolcopone 3 times a day. The new combination takes over an hour to kick in as oppossed to the 30 to 45 mins of the old 100mg sinemet. The on time is huge compared to the 100mg. I experienced plenty of down time between doses on the old meds, The new meds under the controlled release system has no downtime. Absoluutely brilliant.

Unmedicated, there is no way I can do what you do. Even prior t o that dreadful last Monday I was limited to what I could do once the meds wore off. I am interested to know how you do it.


Hi Howard,
Your vomiting could still be an infection. One other thing I thought of is sudden chane of meds can cause this sort pf problem. Have you made any changes there. Casting my mind back, I stopped pergolide suddenly, and I had the same dreadful offs. I went back on to it and slowly titrated off. I returned to normal, where unmedicated I can shower, dress and drive with no problems. Incidently, each time I have had very bad offs, I have to urinate very frequently.
Ron

[Howardh]

I think you have nailed it. My darling sister who incidently is the most amazing cook had coated the chicken fillet pieces in a scrumtious bread crumb mix. As I am gluten and wheat free and the crumb mix was not..there in lies a lesson well learnt.

There were no flu like symptons and no unusual foods or seaweed.

Howard-

I had wondered if anyone else had had times when meds simply had no effect whatsoever. I mean triple and quadruple dosing and zero effect. I have had such episodes for about three years. Unrelated to infection but definitely related to diet, in my case. By trial and error, I have found it to be a reaction to MSG in food. This actually translates to MSG > glutamate > overstimulation of NMDA receptors > overwhelming of neural firing.

I don't know if there is a clue there or not. If no one else became ill, a pathogen might not be the problem. And no flu-like symptoms. Any unusual foods? Anything with seaweed?

-Rick

[Howardh]

in a new era, and along with one of our top neuros plus my GP we are test and measuring in new uncharted territory. Transferring from the old much weaker meds (100mg Sinemet) to the more powerfull 200mg CR sinemet is a bit scarry. Any time meds are increased the chances are that side affects will also increase. I have had four days of very little off time, with the much stronger sinemet and its efficient controlled release system. On average the new meds are taking 80 minutes to kick in on my first dose, and my on times are 2 4 4 4 4 4. Apart from the first scheduled med take at sun rise there is no off time. I have juggled with the tiiming over the past week, and I have now established a pattern that works for me. This was my schedule for today.

6.30am 1x 200mg CR Sinemet. 1x half 100mg regular sinemet. 1x Tolcopone.

7.50am breakfast.

9.00am 1x half 100mg. 1x CR 200mg.

1.00pm 1x Tolcopone. 1xhalf 100mg 1x CR 200mg

200pm Lunch

5,00pm 1xhalf 100mg 1x CR 200mg

6.30pm Dinner

9.00pm 1x half 100mg 1x CR 200mg 1x Tolcopone

1.00am 1x half 100mg 1x CR 200mg


Summary. Under the old system. 6 times meds per day every three hours. Quicker on time. shorter lasting period. Not a controlled release system which meant plenty of offs and ons during the day. And a managed off period after midnight of about 6 hours.

The new controlled release system, no on and offs. 6 times meds per day every 4 hours. Longer to get to on time in the initial first med take, then remained on all day. Mobility still absent during the short off period leading up to the first dose of each day. And that is a concern.

[reverett123]

First, glad to hear that you are off the "rollercoaster." Going "on" and "off" throughout the day seems to do its own type of damage as the system revs up only to run out of fuel.

Second, that long wait in the morning is all too familiar. For me it was 0ne Sinemet CR and one 4 mg Requip and then wait one to as much as three hours. However, the best thing I have discovered about the mucuna experiment is that I can break the CR and just take half witn just one tsp (5 g) of mucuna and I am on in 15 to 30 min. I still take a requip with it on the assumption that that will prolong the action.

Third, it isn't that the CR is "stronger" but rather that the dose is metered at a rate that does you more good. Somewhere I read that you actually only get 85% as much ldopa from the CR form. And don't be afraid to break the little suckers. It is not a coated tablet but is instead imbedded in a polymer matrix. Don't crush it but breaking it is no big deal and gives you more control. Again, the goal is to stay off that darned rollercoaster.

-Rickbbbbbbbbb
in a new era, and along with one of our top neuros plus my GP we are test and measuring in new uncharted territory. Transferring from the old much weaker meds (100mg Sinemet) to the more powerfull 200mg CR sinemet is a bit scarry. Any time meds are increased the chances are that side affects will also increase. I have had four days of very little off time, with the much stronger sinemet and its efficient controlled release system. On average the new meds are taking 80 minutes to kick in on my first dose, and my on times are 2 4 4 4 4 4. Apart from the first scheduled med take at sun rise there is no off time. I have juggled with the tiiming over the past week, and I have now established a pattern that works for me. This was my schedule for today.

6.30am 1x 200mg CR Sinemet. 1x half 100mg regular sinemet. 1x Tolcopone.

7.50am breakfast.

9.00am 1x half 100mg. 1x CR 200mg.

1.00pm 1x Tolcopone. 1xhalf 100mg 1x CR 200mg

200pm Lunch

5,00pm 1xhalf 100mg 1x CR 200mg

6.30pm Dinner

9.00pm 1x half 100mg 1x CR 200mg 1x Tolcopone

1.00am 1x half 100mg 1x CR 200mg


Summary. Under the old system. 6 times meds per day every three hours. Quicker on time. shorter lasting period. Not a controlled release system which meant plenty of offs and ons during the day. And a managed off period after midnight of about 6 hours.

The new controlled release system, no on and offs. 6 times meds per day every 4 hours. Longer to get to on time in the initial first med take, then remained on all day. Mobility still absent during the short off period leading up to the first dose of each day. And that is a concern.

[paula_w]

I saw a poster presentation at the AAN about a new pill that is going to include both short and timed release sinemet together. All I could get after asking a few times about clinical trials is that they were at the "proof of concept" stage.

Sounds like your crisis is over for now Howard - dehydration alone can really leave you in bad shape.

paula

[Howardh]

and some confidence returns as the short off time pre initial med intake period has the body able to move sufficiently well enough to be independant and functional once again. Another pleasant surprise was the 42 minutes it took for the initial med intake of the morning to kick in. A huge improvement from yesterday. However I am still in the test and measure stage before reporting back to one of the finest neuros in these parts 11.00am Monday 28th. And one days good results does not cut it in the overall scheme of things. Still, I hope the kick in stage at the start of each day remains as today. Time will tell.

I am wondering Rick, Ron, CS, Tena, Paula, Jaye and anybody else who would like to chip in if the 720mg of COQ10 I take with my last meds before retiring has any play, or the 120mg of COQ10 I take with my first meds of the day? I replaced the Ginseng I was taking with COQ10 as the Ginseng in NZ is vastly different to the U.S. model. I had started the COQ10 a few weeks back and had built up slowly over time to the 720mg I am now taking. On the old meds and the off on periods during the 6x 1.5 sinemet every 3 hour intake of med period, including the long 7 hour off period at night I was getting big improvment in mobility. And that has returned today on the new 6x 200 CR med program, implemented every four hours. The new CR 200mg sinemet continues to amaze with still no 0ff time during medicated stages. Absolutely brilliant. Is there anybody else who has switched from the old 100mg sinemet to the new 200 mg CR sinemet?.

The question still remains why the body was completely immobile during the off periods from that fateful Monday Morning 14th until yesterday. People were astonished I kid you not to see this frozen immobile left arm shake feeble sickly person lying prone unable to carry out the simplest of tasks, and then to see that impotent life suddenly transformed into a spirited energy driven athlete once the meds kicked in, sprinting illegally up and down the Hospice corridors. (no running in hospital wards. oopps sorry) I can assure you some were bewilded by it all. "Is that the same lifeless almost dead looking guy that was lying on that bed a minute ago unable to move any part of his body without assisted help?" You're kidding me?"

[reverett123]

...I can only speculate :)
I see three overlapping periods - the Event, Pre-event, and Post-event.
Pre- and Post- may simply be fortuitous reshuffling of meds.
The Event, however, is more interesting. Something you ate, obviously. No fever. Purging. Reacting to a toxin, perhaps? And, assuming others ate each dish, an individual response. That reduces both pathogen and toxin as an explanation.

Other than the breading on the chicken, anything else unusual on the menu? Beans in particular?

I have never read anything linking CoQ10 to such a reaction.

-Rick


and some confidence returns as the short off time pre initial med intake period has the body able to move sufficiently well enough to be independant and functional once again. Another pleasant surprise was the 42 minutes it took for the initial med intake of the morning to kick in. A huge improvement from yesterday. However I am still in the test and measure stage before reporting back to one of the finest neuros in these parts 11.00am Monday 28th. And one days good results does not cut it in the overall scheme of things. Still, I hope the kick in stage at the start of each day remains as today. Time will tell.

I am wondering Rick, Ron, CS, Tena, Paula, Jaye and anybody else who would like to chip in if the 720mg of COQ10 I take with my last meds before retiring has any play, or the 120mg of COQ10 I take with my first meds of the day? I replaced the Ginseng I was taking with COQ10 as the Ginseng in NZ is vastly different to the U.S. model. I had started the COQ10 a few weeks back and had built up slowly over time to the 720mg I am now taking. On the old meds and the off on periods during the 6x 1.5 sinemet every 3 hour intake of med period, including the long 7 hour off period at night I was getting big improvment in mobility. And that has returned today on the new 6x 200 CR med program, implemented every four hours. The new CR 200mg sinemet continues to amaze with still no 0ff time during medicated stages. Absolutely brilliant. Is there anybody else who has switched from the old 100mg sinemet to the new 200 mg CR sinemet?.

The question still remains why the body was completely immobile during the off periods from that fateful Monday Morning 14th until yesterday. People were astonished I kid you not to see this frozen immobile left arm shake feeble sickly person lying prone unable to carry out the simplest of tasks, and then to see that impotent life suddenly transformed into a spirited energy driven athlete once the meds kicked in, sprinting illegally up and down the Hospice corridors. (no running in hospital wards. oopps sorry) I can assure you some were bewilded by it all. "Is that the same lifeless almost dead looking guy that was lying on that bed a minute ago unable to move any part of his body without assisted help?" You're kidding me?"

[Howardh]

Rick. The cause of symptons had been established.

The COQ10 was in reference to the (so far) improvement in on time associated with the sinemet intake. I had dropped Ginseng ages ago for reasons explained and replaced with coq10. So far results good.

[aftermathman]

not much of value to add (so what else is new), but just a note to say I am glad your new drug regime is providing benefits.

Perhaps your "freezing" was related to your vomiting, your body probably lost a lot of water / amino acids and perhaps went into shock for some reason, (perhaps your cricket team won :) ).

I also have started Coq10 and like it enough to continue, (and it costs an arm and a leg in old blighty !!!).

Take care,
Neil.

[Howardh]

Niel. The COQ10 is an interesting one. The NZ Ginseng did not work for me. It is vastly different from the U.S. Ginseng with totally different ingredients. It is too early to tell but the initial testing suggests Q10 is giving me a longer on time and up until this morning a shorter off time during the first meds of the morrning. Hold the cricket bat eeerrr the phone....... This mornings meds took 80 mins to kick in, still not tooo bad. i've had one occassion where the kick in time was over two hours.

I wonder if the same speculators on Wall Street who are creaming it with top dollar bidding on oil, thus driving the price of fuel beyond belief ($NZ120 to fill car today. $NZ55 less than a year ago) are doing the same with Q10:D

The neuro has increased my snmt from 900 mg per day to 1500mg per day
and that seems a huge jump. So far it has meant being on for over 22 but what of the consequences going forward. What is known to be a safe level? Anybody on 1500mg per day snmt or more. And I wont mention the cricket:(:(

[aftermathman]

this earlier thread as to the "safe level of sinement" (misspell so you may have missed it) may help.

http://neurotalk.psychcentral.com/showthread.php?p=154222

Neil.

[Howardh]

brilliant Niel just what I wanted to know. Must have missed that thread when it was doing the rounds.

[aftermathman]

seems like you're on the high side but in no way exceptionally high.

Enjoy the dopamine :)

Neil.

p.s. Our gas is now £1.10p per litre or £5 per gallon thats 9.9 US Dollars per gallon or 12.7 New Zealand dollars for a gallon of fuel. Beat that !!

[paula_w]

Howard,

i take between 13-1500 mg of sinemet a day. For the first half of the day i need meds every two to two and a half hours, then I back off in the evening. I take a low dose xanax to sleep, synthroid for hypo thyroid, prozac for depression - just one low dose, and the only other med for pD - amantadine. i would be completely dyskinetic without it. I have received more benefit from amantadine than requip. Selegeline and mirapex got me through 7 years of diagnosis and at least ten from onset of symptoms. I am pretty fine tuned....food is something to be worked around.

still hanging in
paula

[CTenaLouise]

no flu like symptons. We are experiencing a long hot summer in this part of the world. Autumn (fall) has not arrived although we are in the middle of our autumn period. Fitness and health levels are excellent. The only sympton experienced was the nausea and vomiting which has now completely cleared. The new CR 200 sinemet is doing a great job once it kicks in an hour after taking. The off periods are daunting and unpleasant. Each day will be monitered. The longer on periods are brilliant. The contrast between on and off is huge and the immobility is devastating.

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after vomiting -your blood ph will be acidic - and your electrolytes need to be restored - that is the only thing - I have found my dear howard...
luv
tena

[Howardh]

the link you provided gave me new knowledge on how much the body can take when increasing quantities. And as for the cost of food, energy, etc, the commrcialising of AMWAR, the 24 hour research and development into fusion energy and the mass production of bio crops via genetic enginering, now if we could just convince those tree huggers the world will not end tomorrow.....................The BLACK CAPS have arrived, with soooo many of our players transferring to the lucrative Indian League and a market that contains a billion crazed Indian fans, this series against England will be a rebuilding phase for us. Already the scribs are labeling the kiwis NZ D

Thanks Paula, knowing that the body can with stand large quanties of meds. is reassuring for me especially going from 900 mg per day to 1500. Neil's link and your own experiences provided me the data neccessary to carry on going forward.

Tena, as well as electrolites i am trying a course of pro biotics. recommended by a former GP of mine before she transffered to Australia. Pro Biotics apparently replaces the good bacteria in the gut lost through stressful times.